Bringing Parent Voices into a Pediatric Research Network Through a Virtual Parent Panel

Area of Science:

• Child Health Research
• Stakeholder Engagement
• Practice-Based Research Networks (PBRNs)

Background:

• Longitudinal engagement of parents as stakeholders in practice-based research networks (PBRNs) requires additional strategies.
• The objective was to establish a virtual Parent Panel for remote parent engagement and input on child health research.

Purpose of the Study:

• To create and maintain a virtual Parent Panel for ongoing parent involvement in child health research.
• To utilize parent feedback for enhancing research practices within a PBRN.

Main Methods:

• An existing online parent survey study was used to recruit participants for longitudinal engagement.
• Parents completed brief, monthly online questionnaires on child health research topics, following an initial survey on vaccination pain management preferences.

Main Results:

• Out of 412 initial survey completers, 131 parents confirmed interest in the Parent Panel, with 105 providing demographic data (predominantly female, white, 31-40 years old, college-educated).
• Motivations for participation included altruism, unique perspectives, and personal experiences; parents believed their input would benefit research, parents, and children.
• Monthly surveys were sent to up to 131 parents, achieving response rates of 35% to 80%, leading to multiple PBRN changes based on feedback.

Conclusions:

• A virtual Parent Panel was successfully established and sustained, incorporating parent feedback to drive changes within the PBRN.
• Practice-based research networks (PBRNs) can adopt similar virtual strategies to engage parents as vital stakeholders for improving child health research.